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The illness has robbed Ms Stace of her career as CEO of Cure Brain Cancer Foundation in Sydney, and left her spending her life savings searching for a cure overseas.

But now Ms Stace is hoping a new charity-led investigation will finally help get what could be up to 50,000 Australians the help they need.

Even getting a diagnosis of the illness, which is similar to Lyme Disease but can’t officially be called that as Lyme Disease hasn’t been found in Australia, is notoriously difficult.

Doctors always told Ms Stace her tests were fine and she was just stressed.

Catherine Stace was a high flying businesswoman and mum of two who was full of energy. (Supplied)

It was only when a friend saw a story about Lyme Disease on A Current Affair she started to realise the similarities.

“She said: ‘I think that’s what you’ve got,” said Ms Stace, who started doing some research online.

The gruelling symptoms she’d had for months matched what she read.

Ms Stace believes she was bitten by a tick on Sydney’s northern beaches in 2014.

It was the final stop on a holiday road trip with her two children.

Three weeks later, the mother-of-two started suffering from flu-like symptoms.

The Lyme Disease-like illness has robbed Ms Stace of her career as CEO of Cure Brain Cancer Foundation in Sydney, and left her spending her life savings searching for a cure overseas. (Supplied)

Soon after, the accomplished public speaker was totally floored at an event she was talking at.

In her impressive career she’d spoken at high profile events and places including the National Press Club in Washington DC, so she couldn’t understand why she couldn’t get through her speech, and was shaking.

The walk up the stairs to her apartment was a struggle, and there were times when she fell asleep at her desk.

The businesswoman thought she might have a brain tumour, or had suffered a stroke.

But after hearing about the A Current Affair episode, Ms Stace managed to find a doctor in Sydney to help – few recognise the existence of the disease - and tests confirmed she was infected with borrelia, the type of bacteria which causes conditions like Lyme.

Catherine Stace was a high-flying charity boss and mum, whose life has been changed after she was bitten by a tick, causing a condition similar to Lyme Disease. (Supplied)

Antibiotics did help a little, but she was far from cured.

She was so sick, she had to resign from her job and move to Bendigo, Victoria after being unable to afford to stay in Sydney.

One potential cure was ozone therapy, which cost her $25,000 at a clinic in Cyprus. The controversial treatment saw ozone gas added to her blood.

Ms Stace also tried hyperthermia treatment - where the body is heated up to 40C to kill bacteria, on the Gold Coast.

Catherine said since she's had the Lyme-Disease-like illness she has become a recluse. (Supplied)

And while those treatments, plus alternative medicines, have helped a lot, she said she’s far from recovered.

“I was vibrant, energetic, career-driven, full of life and a hands-on mum, adventurous, loved life, had friends and was social,” she said.

“I’m a recluse now.”

Ms Stace is using the expertise she developed in her impressive career to push for change.

She’s on the board of the Lyme Disease Association of Australia (LDAA).

For years Lyme-like diseases were completely dismissed by medics as not existing in Australia.

Catherine Stace was a high flying businesswoman who juggled being the boss of a charity with life as a single mum to two boys.
But a tick bite the energetic 51-year-old got on holiday has completely shattered her life.
(Supplied)

But a senate inquiry in 2016 called “Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients’ finally forced the Australian government to take action.

One doctor told the enquiry the illnesses could affect up to 50,000 Australians.

The inquiry came up with a long list of recommendations

These included spending $3m on research, clinical trials and developing treatment guidelines - but the LDAA said nothing is happening fast enough.

So it has set up a scientific advisory committee.

It’s being led by Macquarie University professor, neuroscientist Gilles Guillemin.

He wants to see tick-borne diseases made “notifiable” alongside conditions like measles and salmonella, which would mean authorities have to be alerted of cases.

“Science is the missing link that needs urgent attention for the situation to be properly addressed,” he told nine.com.au.

“Together we hold the power to change the lives of Australians suffering from debilitating symptoms derived from ticks.”

Sharon Whiteman, CEO of the LDAA, said the condition is commonly misdiagnosed as everything from motor neurone disease to chronic fatigue.

Ms Whiteman said it’s vital the new Committee takes a “fresh, innovative look” at the issue, and presents the findings to the government.

“Lyme patients are medical refugees in Australia,” she said.

An Australian Government spokesperson, said: "The Australian Government acknowledges that further research is required to increase our understanding of tick-borne illnesses in Australia and the cause of the debilitating symptom complexes.

"It is hoped that the National Health and Medical Research Council’s $3 million targeted call for research into debilitating symptom complexes attributed to ticks will encourage researchers to further investigate these complex issues."